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3 Years of Keira

3 Years of Keira

Wow. It has been a minute (or more like 6 months or so) since I’ve actually posted an update here. Life, travel, advocacy, parenting, work, holidays and everything in between has taken up our time and if there’s one thing I know: time with our girls over anything else is time not wasted. Now that…

by rileysroad February 27, 2023February 27, 2023
Advocacy in Atlanta and London

Advocacy in Atlanta and London

This month has been a whirlwind of travel – first to Atlanta to speak about Right to Try 2.0 at the State Policy Network’s 30th Annual Conference and then to London to speak about the gene therapy Keira received, how it has transformed her life and how we are helping other families like ours. Next?…

by rileysroad September 29, 2022September 29, 2022
PFDD for MLD on Oct 21st

PFDD for MLD on Oct 21st

These letters may not mean much to you but they mean SO much to the MLD community of patients and their loved ones. Because on October 21st, a select group of individuals in that community (including yours truly), get to share their stories in a PFDD, meaning Patient Focused Drug-Development meeting, with the FDA, researchers,…

by rileysroad September 6, 2022November 8, 2022
Right to Try 2.0 Passes in Arizona

Right to Try 2.0 Passes in Arizona

After testifying at the Arizona Senate and House of Representatives, sharing our family’s story and how the expansion of the original Right to Try Bill could help families like ours, I’m thrilled to share that Right to Try 2.0 has passed and was signed by Governor Doug Ducey! Right to Try 2.0 is a first-in-the-nation…

by rileysroad August 17, 2022August 17, 2022

Armer Foundation Gala

In 2020, when we knew we had A LOT of money to fundraise to save Keira’s life, Dave’s Aunt Malinda suggested her friend Jennifer’s non-profit as a supplement to fundraising on GoFundMe. I had never heard of The Armer Foundation for Kids before and was a little skeptical at first but after some research and…

by rileysroad August 8, 2022
Mother’s Day Rings Different After D-Day

Mother’s Day Rings Different After D-Day

It was a few days before Mother’s Day this year that Dave had to remind me that it was coming up the next Sunday. And immediately I got that same feeling of dread and guilt that I felt on my first Mother’s Day after receiving Livvy’s diagnosis (coined D-Day). I was sick to my stomach.…

by rileysroad July 15, 2022July 15, 2022
2022 Cupcake Gala

2022 Cupcake Gala

It’s been so busy this past month that I haven’t had a chance to update the blog regularly but I can’t not mention our trip to Philadelphia, Pennsylvania last month to attend The Calliope Joy Foundation’s annual Cupcake Gala. One of the special guests in attendance? Our very own Keira. The Calliope Joy Foundation was…

by rileysroad June 15, 2022June 15, 2022
One-on-One Time for Eva

One-on-One Time for Eva

I would be remiss not to mention how much of a priority it has been for us over these past two years to ensure Eva (our oldest, who is 6), has one-on-one time with Dave and I or time together with just us and not her sisters. Livvy and Keira’s medical journeys have been the…

by rileysroad May 4, 2022
Breaking Records at Wish Ball

Breaking Records at Wish Ball

A few months ago, we were approached by Make-A-Wish Arizona to see if we would interested in sharing Livvy’s wish (her swingset) in a video that would be played at their biggest fundraiser of the year, the Wish Ball. If I’ve learned anything from this journey so far it’s that sharing our story can only…

by rileysroad March 29, 2022March 29, 2022
Livvy, the Sparrow

Livvy, the Sparrow

Last year after we returned from Italy for Keira’s treatment we were connected with a non-profit organization called Sparrow Clubs USA which is based in Oregon but getting into the Arizona market and looking for a family – in particular a child with medical needs like Livvy – to partner with as they launched their…

by rileysroad March 11, 2022March 11, 2022

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